New hope for children at risk of New Zealand’s most iniquitous disease

Nathanial Harland was four years old when his daycare teachers noticed the usually playful boy was lethargic and alone in a corner. That day a doctor listened to the child’s chest and told his family to take Nathaniel straight to hospital – he had a heart murmur.

Further testing showed his heart had been damaged from an earlier, undiagnosed bout of rheumatic fever, a serious but entirely preventable disease that has been all but wiped out in most developed countries but which is still present in New Zealand and Australia.

“That was a huge shock … it was a huge change in our life … I was at the hospital 24/7 with Nathanial and my husband took on the role of full-time carer at home,” said Natasha Harland, his mother.

Nathanial, now 12, has to undergo regular, painful injections and has just also been diagnosed with lung disease. He gets heart palpitations and has had bouts of falling unconscious, Natasha said.

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“He has a high pain threshold, so when he says he isn’t feeling well, that is the time for us to call an ambulance because he goes downhill quite quickly.”

Rheumatic fever can be a deadly autoimmune disease triggered by untreated step-throat or, as New Zealand researchers have recently discovered, untreated skin infections. It can be painful, cause neurological effects, and can develop into irreversible rheumatic heart disease, requiring long-term drug treatment and, on occasion, heart valve surgery.

It is a disease divided down racial lines in New Zealand – 93% of cases present in Pasifika and Māori children. Pasifika children are admitted to hospital for rheumatic fever 140 times more often than children of “European or other” ethnicities, while Māori children were admitted 50 times more often. On average 140 people die from rheumatic heart disease each year. Roughly 160 new cases are diagnosed a year but many cases go unreported.

There is no cure, but a government-funded project is under way in New Zealand to assess whether a vaccine is possible.

Like many children diagnosed with rheumatic fever, Nathanial is Māori (Ngāti Maniapoto). Less typically, his family did not face the socioeconomic and housing pressures of many of those who contract the disease; overwhelmingly, rheumatic fever is a disease of poverty.

New research published in the journal The Lancet has uncovered the strongest evidence yet that those who live in overcrowded housing develop skin infections and those who lack access to primary healthcare are more likely to develop acute rheumatic fever.

Lead author Prof Michael Baker, from the University of Otago, said it was the first time researchers had investigated risk factors for group A streptococcal infections of the throat (strep throat) and skin (strep skin) that can cause rheumatic fever.

“It is now the most iniquitous disease probably in New Zealand,” Baker said.

“It has alarmed paediatricians and epidemiologists for decades that we still have this disease in these populations – and when you look at the literature to figure out what’s driving the risk factors, there is literally nothing there.”

Baker was also involved in a 2021 study that, for the first time, showed a link between skin infections and the disease. “[The studies] are all pointing in one direction and that is: skin infections … are likely to be the major driver of rheumatic fever and therefore need to be a major focus for preventing this disease.”

It was a major step forward to have identified a key pathway driving the risk of rheumatic fever, he said.

“That’s the real evidence we need to convince clinicians they should go all out on treating skin infections.”

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More than 10% of New Zealand’s population lives in overcrowded housing. The reasons are many, but a runaway housing market, high rents, stagnant wages, a lack of social housing and increasing costs of living are the most significant factors. Meanwhile, the country has widespread problems with damp, mouldy housing.

The study found that supplying suitable housing and minimising household crowding could reduce the incidence of acute rheumatic fever.

Creating better living conditions must be the long-term priority, said Distinguished Prof Philippa Howden-Chapman, from the University of Otago, who sits on the board of Kainga Ora, the country’s public housing agency.

“We are undergoing the largest public housing build since the war really, certainly since the 1970s – the government is putting a lot of money in there and it seems to be starting to create a bit of equilibrium.

“But the lag always has tragic consequences, with people getting these infectious diseases.”

‘A national embarrassment’

The rates of hospital admissions for children with acute rheumatic fever and rheumatic heart disease have remained high over the past 20 years in New Zealand, despite efforts to reduce them, according to a report released in June by Cure Kids, the country’s largest charitable funder of medical and scientific research for children’s health.

“On many measures, New Zealand is currently one of the worst places in the developed world to be a child,” said judge Frances Eivers, the children’s commissioner, who provided commentary for the report.

“It’s a national embarrassment,” said Dr Ruth Gorinski, the chief executive of Heart Kids NZ, the only charity dedicated to supporting and advocating for children with heart problems, including those who have acquired rheumatic heart disease.

One of the key election promises of the prime minister, Jacinda Ardern, before being elected was reducing child poverty, and on entering government she made herself the minister for child poverty reduction. She has made good on some of those promises, but not all.

“It’s not going to be an effective investment of any amount of money that Jacinda pours into it until she looks at a collective approach,” Gorinski said. “It needs to be equity focused, family and whānau-centred, developmentally and culturally appropriate and have the voice of young people.”

Harland wants to see a national register established, so strep infections can be tracked, schools can be informed and communities at risk can be supported.

“This [problem] has been around for years and years – and what has been done about it? Nothing that I can see.”